This blog is about my 8 year old son Joey and our journey into diagnosing his PDD-NOS and Epilepsy, learning from it and helping others, as well as being a great place to store all the information I gather along the way.

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Wednesday, October 28, 2009

Joey's OT has been Halloween themed for the month of October and they've been having so much fun. Joey had to walk balancing pumpkins on his head and even had to crawl over big pumpkins. He made a ghost out of plastic bags and a balloon. He's even worked on fine motor skills by cutting up small pieces of tissue paper, crumpling them up and pasting them on a foam ghost. He also had to make it through a Halloween maze, navigating different terrains and practiced trick or treating with another young boy.

I am so glad that Joey has had the opportunity to start OT because it is helping him tremendously.

Wednesday, October 14, 2009

Sometimes I wonder what it looks like to the outside world. Joey's Autism. Does it look like a typical child, throwing a fit, when in reality he's upset because a routine has been broken? Does he look like a sweet angel to the people who love him when he's having a good day, when they don't know the blood, sweat and tears that went into making sure his day went as planned so he would "behave appropriately" for the event or occasion?

I struggle sometimes with Joey's Autism. Some days are easier than others. Some days, I feel all alone...with my guilt, my sorrow, my feelings of loss. No one understands what it's like to have a child with Autism unless you have one yourself or care for and love a special child. The most sympathy and support I get are from people who understand. They either have worked with autistic kids or they know one. It's the Moms that I used to dance with 20 years ago, that I've reconnected with on Facebook, that help me out. It's my friend Jessica, who's son has Asperger's, who reminds me that I'm doing the best job I can. Occasionally, it's my family, who, as time goes by, are understanding more about Joey's Autism and what it takes to raise him and give him the best life possible.

This journey is tough and not for the weak. Although, I wouldn't change it for the world, I do wake up everyday wondering if I am doing the best job possible and wondering what his life will be like in the future. Only time will tell but I know that with each passing day, his life and the way he navigates it are getting better. Maybe I am doing an ok job after all.

Here is an article from the Autism News. Looks like a great book. I will definitely be picking this up. I think a lot of parents don't give themselves to breathe and are harder on themselves than they should be. I think this book will be a great boost for parents struggling to keep up in the world they have been thrust into.

Counselor-coach offers hope for the future to families affected by autism

By Jim Hart The Sandy Post

Ruth Knott-Schroeder likes the small-town feel of East Multnomah County. She lives outside the urban area in east Gresham and sees some of her clients in her Sandy office.

The rest of her clients could be in another state or another country. It matters not to the professional counselor and coach for living. She can coach over the phone or in people’s homes. She also travels to speak at workshops and trains other coaches.

Because she has an 18-year-old son affected with autism, she has had to become an expert on that topic. And the first thing she learned was that autism affects an entire community.

A recent survey shows an increasing prevalence of the disorder – now about 11 in 1,000 children. Knott-Schroeder says everyone near a child with autism needs to understand what to expect and how to react. That group includes not just parents but siblings, other family members, neighbors and the wide circle of friends and schoolmates who are near the affected child.

With the education she has had, plus the practical knowledge gained at home while parenting an affected child, Knott-Schroeder has enough experience and knowledge to advise other parents and family members just beginning to live with the disorder.

Knott-Schroeder has capsulated the knowledge she gained from the “school of hard knocks” and placed it in a book, published by a London publishing company and available anywhere in the world through Amazon or directly from Knott-Schroeder.

The book is a guide for living with a child affected by any of five disorders in the spectrum of autism syndrome. She said its theme is learning more than just how to cope with this disorder, but also having hope for the future. That’s why she named her Web site “Cope to Hope.”The book has sections on parenting a child with autism, parenting a sibling who does not have autism, parent care and long-term health of parents. She even describes how different the relationships are for mothers and fathers who have a child with autism.

Knott-Schroeder knows exactly what is happening in autism-affected households, and she can advise or model the best practices that will help children have good experiences in life.Because the effects of autism on different families are similar, she has a personal way of knowing what other families are living with.

For 18 years, she has parented a child with autism who attends Gresham schools, and a 14-year-old child, also in Gresham schools, who is not affected by the disorder.

Through her experiences and knowledge, she knows family members and children with autism can live happily together.

When a child with autism reaches adulthood, he or she might have to live in a group home to receive the support and care needed. But whether they live at home or away, they’re still part of a family, and all members need support.

Knott-Schroeder’s book offers some of that support. It also reminds readers that – as with most diseases and disorders – early intervention and treatment is essential to optimum care and reduced effects.

The book, she said, is designed to provide hope and support for families and the entire community.

She also is available to offer individual or small-group counseling to families as well as serve as a networking resource for connections to other professionals in the metro area.

Knott-Schroeder earned a master’s in counseling and has worked at the autism clinic at Oregon Health & Science University. She also is in demand as a national speaker and coach trainer.

Knott-Schroeder is on the staff of River Ridge Counseling and Coaching Services in west Sandy, where she not only coaches families and individuals affected by autism but counsels individuals, groups and families as well as children in need of help with social interaction.

LAST DAY to buy tickets for the Shopping Extravaganza at Anthem Outlets this weekend. Your $20 ticket gives you special discounts and 75% of it goes back to ACT Today, an organization that gives grants to families affected by Autism. More info on AZ Parents Autism Network on Facebook.

ONE DAY LEFT TO BUY TICKETS!!!Don't miss out on the fun... buy yours todayPurchase Tickets Online HERE!Get the girls together and join us for a day of Shopping, Saving & Fun THIS SATURDAY! Tickets are $20 and include special discounts & offers, raffle, giveaways, lunch, baggage check, hospitality area and live entertainment. 75% of each ticket sale goes back to ACT Today!Over $30,000 in prizes will be given away!

Wednesday, October 7, 2009

Joey had another great OT appointment yesterday. They worked on drawing and coloring and did a Halloween craft called 5 Little Pumpkins. He did fine coloring but needed some guidance cutting and drawing. The therapist said to provide opportunities to color or draw while laying down or working on an easel because it forces him to rest his wrist instead of holding it up like he does.

Then, we did our usual Tuesday ritual of going to the "eating store" for Lunchables and then heading to school. At Fry's, Joey told me he wanted the green car wagon but I only saw the red car wagon. He was a little disappointed but then said the he was getting into the red one. The nice greeter heard him and said "I think the green car one is back." I didn't even know they had a green one! Joey was already comfy in the red one so I thought there would a meltdown from all the change but there wasn't! He hopped in the green one and off we went. Progress:)

Monday, October 5, 2009

I couldn't sleep this morning so I was flipping through the channels on TV. I stopped on CNN just as they were saying that a story was coming up about Autism. I was not too surprised by the new statistic: 1 in 91 kids has Autism or a related disorder (ASD). What shocked and saddened me more is that the statistic for boys is 1 in 58 boys and that Autism is found more in caucasians than any other race.

Reading through the article and absorbing the statistics, I wonder if the stats are getting worse because the awareness is getting better. I also wonder if the stat of 40% of the families surveyed said their kids lost the diagnosis is because kids are being misdiagnosed or there are underlying problems that are causing Autism-like behaviors.

Thursday, October 1, 2009

Today's practice started off good. Bryan got home from work early so we all went as a family. When Joey got there, he wanted to wait for Daddy but I advised him that Daddy would be coming in a little bit. I did this on purpose because my ex can't make it to every game so I wanted Joey to get used to being there without him.

Joey then ran to the group of kids and said "wait for me!" He was so cute!

They warmed up and ran the bases. Then they stretched a little bit. My baby was so cute!

I helped out in the outfield as my little man took 2nd base. He was doing so great! He wanted to get every ball and he did...until a little girl grabbed the ball before him. That was it! He threw his mitt down and was done playing. Bryan even said that when he and my ex, Ben, were watching from the sidelines, Ben said "I hope that little girl doesn't get the ball before Joey." We all knew what would happen next.

Well, for the next half hour, me, Bryan and Ben were on the field more than Joey. He finally went back out but did not want to play. At least he ended up back out there. I know he doesn't have to do it but I want him to. I want him to play the game and be integrated with typical children. I want him to learn team work and competition and following rules from an early age. I want him to at least try and not give up. Letting him give up now is setting the precedent that he can quit anything just because he wants to. That would be a disservice to him throughout his life.

I'm glad that even though the coach interrupted our "extinction" attempt (ignoring his outburst), she came over at the end of the game, had Joey give her a high 5 and told him that the team needed him in the game on Saturday. That was great.

We'll see how Saturday goes!

On a side note, Joey does get his interests and skills from both of his parents. Last night, he walked and dance backwards, stating "they call this the Moon Walk, Mama. Boom Boom Pow." The student has become the master! Ha ha! I love watching Joey dance. He really gets into it:)